Our trip to DisneyWorld in June was amazing! It really is a magical place where you can forget about your worries for a little while. We made so many great family memories that we will have forever! It would have been even better if we hadn't picked up some sort of flu but we paced ourselved and by the end of the week we had made it to almost everthing on our list. We are very thankful that we had this very special time together and we are grateful to everyone who helped make this happen for us.
While in Disney I got the news that a very special friend of mine had passed away. Part of the reason for my lapse in writing is because I've been finding it very difficult to sort out all my thoughts and feelings since then. I knew that she was really ill before I left but felt stunned and shocked at hearing that she was gone. Watching the fireworks that night I felt her with me and knowing that she would want me to cherish this time with my family I was able to hold her in my heart and enjoy our time away. It has shown me that you can feel grief and loss and still have room for some happiness and joy. Gill's friendship really meant alot to me and I miss her every single day. Many days have been difficult knowing that she is not here. She faced her illness with such grace and strength. We had many Skype conversations full of meaningful words as well as lots of laughs. My heart goes out to her family, especially her amazing husband who always took such good care of her. Her spirit will stay strong in my life as well as in the lives of many others. xoxo
Our summer has been full of ups and downs. We have been able so spend some great times with family in the past couple of months. Our annual trip to Kenora with the Lindsays was awesome as always. The kids always have such a great time there! Caramel too! We made it up to see the family in Swan River and celebrated Jeff's grandma's 90th birthday! So inspiring to see her still living such a full and independent life! We've had some really fun pool party days this summer too! I love that we are making a point of getting together with family to stay connected instead of just at big occasions like Christmas. Makes for some really nice visits. We celebrated Tyler and Gavin's 15 and 12th birthdays! Can't believe the boys are growing up so fast!!!
So the end of summer seemed to creep on us and before we knew it back to school was here! All three of the boys have settled back into school and everyone is happy with their teachers and classes. It's looking like it will be a great year for all. Hockey is back in full swing so back to the rink we go!
That is pretty much a summary of what we have been up to this summer. As far as my health goes things have been stable. I'm still on the same chemotherapy treatment. My scans in July were very positive showing further shrinkage of the tumours. It also showed that the one in my adrenal gland is now undetectable so as far as I am aware the only tumours left are in my liver and they have all shrunk in size. The ones in my brain have been stable since my last gamma knife treatment. I am tolerating the vemi fairly well being able to manage the side effects with medication and also by taking good care of myself. I usually know what kind of day I'm going to have when I wake up in the morning so I can plan accordingly. I started working out at the gym again and this is really helping me keep up my energy. Some days I feel fantastic! Other days I spend resting and doing my best to get through. I have learned not to harp on it. It is what it is and so sometimes my body just gives in to the toxicity that the drug brings. I am due for more scans in the next couple of weeks which will tell us if I am still responding to the vemi. We are keeping our fingers crossed for some more good news!
I am very grateful that although I do have my bad days, I have some really fantastic days too! The girls and I went with my niece Rachel to pick out her grad dress. She is so incredibly gorgeous inside and out. We are all so proud of the amazing young woman she has grown up to be. Having all boys this is something I will never get to do with them so it was a very special day. (And we all actually agreed on the same dress in the end which was a bonus) Jeff & I have had some really great days by the pool with the boys too! They can spend hours just swimming around making up silly games and competing for the best dive. Kaden learned how to swim the length of the pool twice under water this year without taking a breath, which when the adults tried to do, we all failed. I went with Kaden on the grade 4 field trip this week and had so much fun. On Friday my sister and I went on a road trip to the Petroforms in the Whiteshell. We had a really great day. If you havn't heard of this amazing, peaceful place it's definitely worth the trip. After soaking up all that great healing energy we had our great lunch that we had packed and headed to check out the suspension bridge close by and made our way to the rapids. We stopped to take some crazy jump shots which was quite hilarious. After many, many attempts we finally got a few half descent ones. What a fun way to warm up on a cold day! A big thanks to Mikey and Bonnie who introduced us to this fun idea! It has become quite the challenge!!
This summer I also had the opportunity to talk about sun awareness and living with melanoma with CBC news. I did this interview hoping to raise some more awareness of how to protect ourselves from this disease. If one person saw this and made the decision to skip the tanning beds or decided to slap on some sunscreen this summer at the beach I am happy. I am meeting more and more people all the time who are unfortunately being diagnosed and being consumed into the melanoma world. It is not a place that you want to be. Trust me.
This is my absolute favorite time of year! Fall to me brings such comfort. I always loved playing out in the leaves as a little girl and that hasn't changed. I love getting ready for those cozy winter nights. We've been busy bringing in the garden veggies, freezing, canning salsa, baking cinnamon buns and cookies.... I just love being at home with the kids and being able to do these things right now. I went and signed Tyler up for Driver's Ed the other day and it really dawned on me how grateful I was to be here to do that. It brought me a lot more hope thinking that those things that I've assumed I wouldn't be here to see or do with the boys, I just may! I take none of it for granted. It's been almost 4 years since my metastatic diagnosis and there has been so many really awesome things happen since then. The boys were 5, 8, and 11 - they are now 9 (well almost), 12 and 15. There has been a lot of living during this time and I am thankful for it. So although life is far from perfect and the struggles of dealing with this disease (for the whole family) can be so overwhelming it is all so worth having every day of it!
This one is for you Gill. You will live in my heart every day and I will always remember and cherish you! xoxo
Hi there Natalie! I was reading a few of your posts and had a quick question about your blog. I was hoping you could email me back when you get the chance, thanks : )
ReplyDeleteEmmy
Hi Emmy! Sorry it's taken me so long to get back to you. My email address is njlove@mts.net. Feel free to email me and we can chat.
DeleteThanks!
Natalie
Hello,
ReplyDeleteMy name is Mallory and I happened upon your blog while doing some research for a new endeavor of mine the other day. Having also been a young adult with cancer, I can relate to many of the things that you allude to in your blog posts.
I was wondering if I could have your thoughts on a few things given the journey that you have experienced...really just some of your thoughts and reactions to a few, very short questions. My now husband, Brett, and I experienced a severe lack of resources being young adults while dealing with being cancer caregivers and cancer patients. While medical questions on my treatments, our fears of infertility, etc. were all answered through numerous online articles and nonprofits, as well as the many medical professionals that we dealt with on a weekly basis, Brett and I had trouble figuring out our day to days.
I was wondering if you experienced a similar lack of resources for managing your lifestyle as a young adult cancer patient on a day to day basis? Can you think of any specific resources (websites/tutorials/blogs/etc.) that might have been helpful to you?
I’d love to hear back from you and I really thank you for your time in reading and responding to this. I can provide you with an email address if you are interested.
I would like to change the face of cancer advocacy for young adults and to bring us all something quite important that has been lacking.
Thank you again,
Mallory
Hi Mallory!
DeleteI know what you mean. It is so difficult to dig out helpful resources when you are first diagnosed. Probably the best resource I have found is other survivors. The more I talk to people and listen to their stories, the more I learn. It's so difficult to navigate your way through the system, especially when you are not feeling well and dealing with such tough stuff.
The two organizations that I would say I’ve benefited the most from as a young adult would definitely be YACC (Young Adult Cancer Canada) (youngadultcancer.ca) and the Callanish Society (Callanish.org).
YACC has a national event coming up on November 30th called the Big Cancer Hook-up where YA survivors and supporters will get together in their local communities to connect. I’ve been on a retreat and to a couple of conferences through them and it has really connected me to some awesome people! Their conferences are great learning venues where they cover the many topics and issues related to young adults with cancer. It’s amazing what happens when you get a huge group of young adult survivors/supporters together! So much energy!! Their website is definitely worth spending some time exploring. It’s full of survivor profiles and also links to YA survivor blogs.
The Callanish Society has a young adult program and is focused on providing retreats and programs to help support people living with cancer. I have been on a couple of retreats through Callanish and my connection with them has played a very important part in my healing and wellness. I have found much peace and acceptance with their guidance. They also support people of all ages but do have young adult targeted program as well.
Also, for the more adventurous survivors there is the Survive and Thrive Expeditions (survivethrive.org) offered by this awesome, energetic couple that I met at a YACC retreat. You can go on one of their expeditions where the focus is on living well post-treatments and regaining some of the vitality that may have been lost due to cancer. They have directed three great films that all YA survivors/supporters would benefit from watching which are available on their website. Although I havn’t been on a trip, I know many people who have and describe it as life-changing & epic!
Hope this helps and if you want to chat more about this feel free to email me at njlove@mts.net. Thanks for reaching out!
Natalie